Archive for August, 2022

Benefit of Hope

Wednesday, August 31st, 2022

Thursday, August 25th, 2022

Aug 21

Journey to Texas… We left our home at 1pm and after driving straight for four hours we arrived at our hotel in Liberia. We had a great drive down. We got settled in the hotel and the following morning we were up and getting ready for the big day. We  had an uneventful check in everyone at American Airlines is so nice to me. We went through security with no problems, and were at our gate with almost three hours to spare, It takes a lot to get me ready for a big trip like this.  We have to break down my wheelchair carry me on board Mcgyver me in a seat and so on…. I did so good sitting up! Am very proud of myself on how strong I have become with all my  hard work with Cinthya. The flight went well. Mom gave me a tiny dose of Dormicum, to help me hopefully not have any seizures on the plane. In the end I ended up having two very strong seizures but thank GOD they stopped and only lasted a couple of minutes. For the most part I slept the whole way… I am excited to get there and see Granny and Paw Paw. This is going to be a great adventure I just know it and I feel so blessed to be able to make this trip for another time! 

Texas here we come!

Thursday, August 25th, 2022

August 19th

I am headed to Texas ! Three years ago we were planning to go to Texas for my benefit and the Lissencephaly Convention but then Covid hit! Finally after things settled down a bit with Covid the Lissencephaly Convention was back on and we decided to give it a go and go see friends and family. The Lissencephaly convention was being held at Morgan’s Wonderland my favorite all inclusive park. Unfortunately about three weeks ago the LISS Convention was cancelled …. We were already booked on flights and had planned to celebrate me and my life for another 14 year benefit… Even though we were so excited to meet other Liss families and hear medical professionals and other families speak about liss we are coming to Texas to see family and friends and still planning a big day for us at Morgan’s Wonderland.